Hi all!
Just wanted to give a quick message to say I finally broke out of the hospital yesterday! Of course, not without much ado since I had to bring home a whole crapload of stuff to continue home IV infusions. I cannot say enough good things about everyone while I was in the hospital! The only thing I would have preferred was to have seen my own neurosurgeon more - I finally asked to see him on Thursday morning, and the resident came back with him after a short bit. But mainly I worked quite a lot with the neurosurgery Nurse Practitioner, who was great!!
I also saw the infectious disease team. Turns out the resident who would come first (before the attending would follow) was a guy I worked with when we both did research at the headache center! haha He was a 1st year med student then, and now I'm not sure what year of residency he is in, but it was funny to run into him that way! He did ask me if I was okay with him being involved in my medical care, but I said it was fine. One of my very good friends is an anesthesia resident and I was told he wasn't allowed to be in on my case, which was fine, but he did eventually stop by on Wednesday night to say hello! A number of nurse friends from the unit stopped by as well, which really was very nice.
And of course, my parents were there a lot (Mom took off 3 days of work) and Jason came down for an evening. Made the time go faster!!
I finally got a PICC line on Thursday, and once we confirmed that it was in the right place, I was allowed to be discharged on Friday. Home infusion nurse came by yesterday and was here for what seemed like hours! She was very very nice, but it was a little exhausting. Now that the stimulator is gone, I have my O2 all set up right by the bed in case of getting hit. I am lucky that because I got nerve blocks and anesthesia in the surgery, I have not yet had a CH or even a very bad migraine yet. I know they'll come in time, but for now, it's nice to have that break while trying to recover from everything else. I am to infuse the vancomycin twice a day over an hour via the IV pump and PICC line. So for now, my schedule is 9am and 9pm, but there is an hour play on either side. Plus they told me that if I have to go to the doctor, I should always do the dose early, even if it is a few hours early - because you never know if you'll get held up at doc visits.
Upcoming on the 22nd I have my first follow up with the neurosurgery nurse for a wound check and to remove stitches. On the 26th, I see an infectious disease doc to reevaluate the vancomycin and see how much longer (if at all) that I need to be on it. (Varying thoughts on that, personally - after all I've been through, I really would prefer to just hit this as hard as possible - I don't want to stop antibiotics prematurely and have infection come back AGAIN. I know the biggest part was to get the device removed, but still - I just really want to be sure it's good and dead this time!) Then I also have to see an anti-thrombosis (?) doctor in about 3 weeks because I have history of blood clots (DVTs) in my left arm due to prior PICC, avascular necrosis in knees, and some blood levels that are a bit concerning relating to clotting. Should be fun! (NOT!) haha
On the plus side of all of this, the neurosurgeon does seem like he will help me get a new stimulator in 3 months, although right now he is obviously concerned about the rate of infection. Apparently the occipital nerve stimulators are not getting greatly infected, but the occipital and supraorbital stims are. Weird thing is that it was my occipital incision that was the problem, and not anything related to the supraorbital lead. In the meantime while we are waiting to reimplant, he wants me to get a sphenopalatine block. Long story as to why he wants me to try that, but there is some research looking in that direction for control of intractable chronic CH.
For kicks and giggles, I did ask the neurosurgeon how he feels about DBS for headache. I prefaced the question by saying that I was not looking to do this, nor would my mother EVER consent to my doing it, but I was just wondering what he had to say about it. It was a VERY interesting discussion in which I learned quite a lot. For now, he is not pursuing this type of therapy. The only thing that might make him more interested is if Prof. Goadsby and the very prominent neurosurgeon he has teamed up with in San Fran do legitimate studies to look into DBS. Time will tell, but this is not something I am even considering right now. Fact of the matter is the stimulator I had was working, albeit moreso for the CH than the chronic migraine. If anything, I would be for getting it put back in place, and hopefully in a few months they'll know a little more about the infection process with these.
Finally - the good news is that today I am moving!! I really cannot do anything at all. Still on quite a bit of pain medication, plus have the PICC in my arm and 4 stitched up incisions. My dad is over at my old apartment right now with my boyfriend, his dad, and 3 of his friends. They are loading up the truck and the cars and will be bringing everything to the new place. Once my infusion finishes up, I will start getting ready here and my mom and I will go meet them at the new place. Not sure if I will stay there overnight or not, though. Depends how I am feeling after being up and about for a little bit. There is so much that needs to be done for me to actually be able to stay there - we have to have groceries, some stuff has to be unpacked and so on.
It's also going to be a bit interesting coordinating home care at both places, but they seem to be working with us pretty well! Gotta go - infusion just about done and have to get ready to try to go to new apartment!
Sorry for focusing so much on all this stuff lately. I know it will get better as I recover, the moving stuff gets settled, and my grandpa's surgery happens next week!
Hugz,
Carrie
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Home from Hospital (Read 2276 times)
